A 40-year journey

By Zubeida Mustafa

siut9THIS week the Sindh Institute of Urology and Transplantation (SIUT) is holding an international symposium to celebrate 40 years of its existence.

The logo designed for the occasion sums up its philosophy: “Every human being has the right to access healthcare irrespective of caste, colour or religious belief, free with dignity.” At SIUT you actually see this happening.

For long, it was the dream of its founder, Dr Adibul Hasan Rizvi, to create a nucleus that would evolve into an equitable and inclusive healthcare system that would be accessible to all.

This began to take shape in 1975 and today SIUT stands proud as an 826-bed tertiary care hospital with 45 specialised clinics, and a well-equipped laboratory and diagnostic facilities providing state-of-the-art medical care to a million patients annually. Nothing is charged for the services and every patient is treated with dignity. Over the past 40 years, Dr Rizvi’s idealism has in turn inspired his colleagues without whom this remarkable project could not have been sustained.

Deceased organ donation is SIUT’s new challenge.

The most distinguishing feature of SIUT is its performance in the field of organ transplantation. It is the biggest centre in the country where renal transplantations are carried out as a routine service for patients with end-stage kidney failure. Above all, this is being done ethically within the bounds of the law. The success rate has been high.

Just before the symposium was inaugurated, Transplant Patient Number 4725 had received a new lease of life. Like others before him, he and his donor are assured of free medicines, health check-ups and medical care for the remaining years of their lives. That in itself makes SIUT unique. That is also something to celebrate.

Transplantation is the institute’s most important and arduous mission. It still has a long way to go and poses a number of challenges. First, it is costly but no urology/nephrology health facility worth its salt can reject the option of transplantation to give a new life to a person with end-stage kidney failure. In Pakistan there are nearly 21 million people suffering from chronic renal disease. Dialysis, which is now available in a number of places, is not the perfect solution.

The second challenge has been the procurement of organs for patients in need of them. Initially, SIUT’s social workers had to struggle to mobilise potential donors among the patient’s immediate family members. It was not easy, but nothing succeeds like success. An end-stage kidney failure patient returning to normal life with a transplanted organ from a family member would convert the sceptics.

When Rasheed, a young man from Azad Kashmir, became the first patient to receive a transplanted kidney in 1985, the Urology Ward of the Civil Hospital (SIUT’s predecessor), entered uncharted waters. There were no laws regulating this practice except for the surgeon’s own ethics.

Efforts by SIUT to get parliament to adopt a law on organ donation and transplantation met with failure when the Senate rejected a bill on the subject in 1994. Four years later, when Naveed Anwar became Pakistan’s first deceased organ donor, there was still no law on the subject.

As a result, organ trade became rife and brought the country into disrepute. Unscrupulous surgeons in Punjab and Islamabad allegedly made big money from foreigners by transplanting organs bought for a pittance from impoverished villagers.

Faced with this ugly situation, efforts were intensified to get the government to introduce a law to ensure compliance with the global standards for organ donation. SIUT joined hands with WHO in what Dr K.M. Bile, the former WHO representative in Islama­bad, terms an ‘exemplary legislative partner­ship’. The idea was to work through the courts and legislature while mobilising Isla­mic scholars, media and civil society in support of the Trans­plantation of Human Organs and Tissues Act that was finally enacted in 2010. This was a major victory and a milestone in SIUT’s journey of 40 years.

What next? The need is to mobilise people for deceased organ donation, something in which SIUT has again taken the lead. It established a registry and over 5,000 people have signed donor cards so far. But this is not enough. The drive will make an impact only when this figure runs into hundreds of thousands.

With religious scholars supporting dece­ased organ donation, it is surprising that social and cultural taboos still deter people from enlisting as donors. This resistance must be overcome by launching a massive campaign of education and information on the issue.

SIUT draws strength from its partnership with civil society. If its transplantation programme — which is an integral part of its functions — is to succeed, the community and the media must step forward to motivate people to sign donor cards. Simultaneously, SIUT should also focus on the preventive approach and create public awareness of the causes of kidney diseases and how their incidence can be lowered.

Source: Dawn